Acute Disseminated Encephalomyelitis (ADEM) Support Group

Looking for advise


#1

Hi everyone, just looking for some advice. My 8 year old son was diagnosed with adem and meningoencephalitis in June this year. He was put into a coma for 8 days, recovery was going really well, he’s now not on any medication. I’m concerned about him at the minute he’s been having these periods where he dazes out and doesn’t remember them and random naps that he doesn’t remember too. I took him to get checked over and they sent him for a eeg to check his brain activity, all I’ve been told is that the eeg was abnormal and I’ll have to wait for the results to be analysed they say it could be absent seizures? Has anyone else experienced this?


#2

Hi Shirelle, sorry for your son. I can’t help with this question as I didn’t have EEG done. I’m an adult, 4 years post ADEM, no findings for me or known prior event. Do you have a Facebook account? If so you could ask this question, search for: Acute Disseminated Encephalomyelitis (ADEM) Discussion Group. If not, I can ask the question for you. Let me know if you don’t get answer here. Regards, Natalie. Australia


#3

Our son (age 6) got ADEM Feb. 25th and was in an induced coma for about the same time. His recovery is not so good. But we were getting him off most of his meds and just last month he started having absent seizures. He had “storming” in the very beginning, but never had any seizures until recently. The doctors say they are harmless, but they don’t really know why they popped up. If you read much about brain injury, it is quite common to develop them even years later. It doesn’t mean things are not progressing, it just means things are changing. The tough thing for us is the initial seizure meds didn’t control them. We are changing things up currently, so we will see if they go away. I am glad your son is doing fairly well, ours still can’t hardly move and can’t talk.